Sense and sensibility

When I thought of starting Today Was Not About Tay-Sachs, I was thinking of the days when the disease did not rule our day but mostly when it did not rule Amélie’s day, it was the fact that she was enjoying it and living it to the best of her capacities and this is what I thought it was important to share!

But I would like to say, for our sake as Amélie’s parents, and other parents in the same situation that for us, there is no time off and Tay-Sachs is never old news, in fact time is in reverse, we have to live life in a very different way and this is not easy.

The day I was told my daughter had Tay-Sachs I died – the person I was, the life I had, the future I envisaged, it all died… but it is not as easy as turning off a button, moving countries or changing names. Amélie needs us and we need each other, so we are still here, we look the same (probably slightly thinner and more tired), we live in the same place, do our day-to-day as much as we used to, but inside I am not the same person and there is no turning back from it.

I would like to think that in someway it has made me a better person, perhaps because I am now involved in trying to help others and doing something worthwhile, but this also makes me think that we should all aim for this regardless and it should not take such situation for someone to do so. Of course given the choice I would rather not think that it is making me a better person, I would rather have a healthy daughter and get on with life being oblivious.

I have read so many blogs, websites and stories of other parents in the same situation and how they deal with their feelings, with their life… some are angry, some are resigned, some are grateful that God is making their child an angel… there is no right or wrong way to deal with this and whatever the way is it needs to be understood by those around the parents.

Make no mistake, no one goes through it as us parents do. Yes, the situation is lived and felt by family members and by close friends but it is different! And it is important that those around acknowledge it, understand it and act sensibly.

We have to deal with the fact that our daughter is regressing everyday, we know what is ahead of us, we cringe inside every time we take her for an appointment (and we have many!) because we don’t want to hear that she has got worse, we watch her every movement to make sure that it is still there, that she is still able to do it, we test her eyes everyday, we have to put elasticated belts around her waist to help her maintain her posture, we need to pay special attention to her drinking and eating and have our fingers crossed that she will do as well as she did on her last meal, we can’t keep her away from germs and lower her immunity but we need to avoid her getting colds and infections as this increases the risk of major regression. We live in constant state of fear and apprehension, not a choice any one would make.

Those around us don’t live this, they feel for us and for our daughter and they try to support us. The best support anyone can give to parents like us is to try to understand, to embrace how we parents are choosing to deal with this awful situation and take it on their stride.

Myths and easy mistakes:

‘They may resent other children…‘ – we are parents, and like any parent we enjoy children, we think they are cute, they are funny and they make the world a better place. Other children existing does not make our child any better or worse, to think that we would think otherwise is a mistake. We don’t resent other children!

‘We won’t be able to relate fully to children of the same age‘ – as regression kicks in, our children start falling behind so we won’t be fully aware of the milestones that other children the same age are now reaching. Don’t be awkward about it, we are normal and we like to be treated so. Of course constantly mentioning how a child the same age may now be proficient in another two languages and is just the brightest of the crop may be pushing it, but children are themselves and should be celebrated however they are.

‘They are fine!‘ – we are not! And until (and if) we are told that our child has a chance we will never be. Parents that laugh and have a normal conversation are not necessarily suffering any less than those who are more able to show their feelings in public. Culture, upbringing and personality makes us all quite different in dealing with all kinds of situations in life and this is no different. Ask! Ask if your friend or family member is ok, ask if they need anything, if they would like to talk, to go for a walk, to have a drink.

‘I don’t know what to say…‘ – we don’t either! No one does! So you can say just that. The most important thing is that we know that you are there for us and our child. To ignore it is to show no compassion and no real concern for either of us. Now days there are so many ways to avoid direct communication, if you are worried you are interfering or that the parents may need space, send a message, an email, a text or even write a card or a nice letter, everyone likes to feel that they are loved and thought of, and mostly all parents like to think that their children are too. You may not get a reply straight away but you will do at the right time.

‘I have problems too…‘ – we all do. And we also did before our daughter was diagnosed with Tay-Sachs. It is part of human nature to create problems if one is not there at hand. However use your sensibility and common sense, do talk about your problems and concerns but do be aware not to make them over inflated and give the impression that your problems are bigger than ours – our perspective on ‘problems’ has changed massively and we will not be able to understand it as we used to – we will instead start to think that you are insensitive and self-centered. Do not concentrate on us only, but do sympathise with our situation.

Mostly it is important that we feel we are being respected. That those around us that really matter are making an effort to understand what we are going through, the changes that have occurred in our lives and how we have changed. To be brutally honest we do not really care about most mundane things, our approach to life becomes so down to earth, so close to nature that we do not have the energy or the emotional resources to be required to deal with anymore than we are already dealing with.

So if you are close to a parent of a child that is ill (not just those with Tay-Sachs) be honest, try to understand, respect them and be there for them.

Coming back to being a better person, we can all be a better person at any time. We receive and send endless chain emails, we look at awful documentaries on tv, we pass by terrible situations every day. We make a mental note that we would like to help, we get home, have a cup of tea or coffee, put our feet up and forget about it… Hospitals are packed with children with many different conditions, some may be helped immediately, some just need organ or bone marrow transplants, their lives depend on it, theirs and their parents’ suffering could end the moment more of us decide to put the cup of coffee or tea down and do something about it!

So please put your cup down, think of how you can help someone and better yourself!

4 Comments

Hi Patricia.
I wanted to write to thank you for starting this site. I am a friend of Debs, James and Isabella I do sometimes worry that I wont know the right things to say, or will say the wrong thing, will be insensitive or lack in understanding of what they’re going through.
I know that I cannot understand how they feel, cannot begin to imagine how Izzy’s diagnosis has changed their lives but I do want to be a good friend and this site I feel is helping me to do that, if only by keeping me more informed of the disease and more aware of the effect on them.
I’m sorry that Amelie has had the same diagnosis, and I hope that you have as many days that are not about Tay Sachs as possible.
XXxx Donna

Donna, thank you for your comment and wishes. It is such a difficult and sensitive situation that I think it is hard for those around us to know how to act sometimes so I thought it might be helpful to just express what we feel and thankfully Deborah seems to agree. Support from family and friends is so important! All the best to you!